Living a long and happy life in spite of having ALS/Lou Gehrig's disease

#courageous

I got to see my rockstar urologist, Dr James Lingamen, this week. In the world of urology, he is Mick Jagger. For approximately the price of a concert ticket, I get a private meet and greet with him every year, also known as my yearly check up. I didn’t know anything about him three years ago when I picked his name out of a long list of urologists approved by my insurance company. I didn’t know that people travel from all over the country, and even from other countries to be treated by him. He was not my first choice by the way, but the Universe/God made sure I ended up with the best urology surgeon in the U.S., or so I was told by every person who saw his name on my hospital paperwork. He informed me that my golf ball sized kidney stone, and smaller stones would have to be removed surgically because they were causing infection throughout my body., and that you actually could die from a kidney stone (or rather, the infection it causes). Even though I couldn’t move an inch on my own, and had an FVC so low that I could not be put under using anesthesia, and could not lie down flat (for a surgery usually performed with the patient lying on their stomach), Dr. Lingamen said he had performed this surgery on difficult cases before with patients using a local (patient awake). He seemed to think it would be no problem whatsoever. What he was actually thinking, I don’t know, but he made me feel like it was no big deal. I got the feeling, later on after hearing comments made by others involved with the surgery, that it was indeed, quite a big deal. I went in for surgery and found out it would have to be delayed a month due to the amount of infection throughout my system. A stint was put in (a dreadfully unpleasant procedure) and I was given a month of strong antibiotics. Fast forward to around a month or so later, and after two days and two surgeries, all my stones on the right side were gone. I don’t recommend having surgery under a local and wide awake, but if that’s your only option, it’s doable. Luckily, during my surgeries there was so much going on all at once and so many people talking, that it was hard to concentrate on any one thing, and the hours flew by. I could definitely tell that the people in the room were used to the person on the operating table being asleep, it seemed like my feet and legs were constantly being bumped into, as if I were just a piece of furniture. But the most important people, my surgeon and anesthesiologist, were very aware that I was awake. They even cranked up the heat for me in the very cold operating room. I was placed in the pulmonary wing for recovery, due to ALS related breathing issues. Except for a couple of bad eggs, I had the most awesome nurses who worked so hard and were such a huge help. My bed was amazingly comfortable. I wish I had the same self adjusting mattress at home. I ended up with a small private room, which meant quiet and I could set the heat on whatever I wanted. My favorite nurse even brought in a roll away cot so my husband could stay with me the entire time, which he did by the way, for four days with very little break.

After four days, I went home. I really wouldn’t want to do it all again, but I did it! And now I have a great story I can tell, although I rarely bring it up in conversation. Usually it’s my husband who recounts the story of my courageous surgery. This week, before I talked to my doctor, I met with a Fellow working with him. As we talked about my surgery, he said he wished he could take me around to talk with some of the whining patients who need simpler procedures but complain about how hard it will be for them and how long it will take. I think my lack of complaining about it all and what some people would view as brave or courageous simply comes from having no other choice. When you know you only have one option, the choice is easy to make. As with ALS, when the doctor says you have no options, you have no choice but to just keep going the best you can, for as long as you can. You may not feel particularly strong, but that’s how you end up being viewed by others. When something minor happens, I think we all complain a little too much sometimes. But when it comes to the big stuff, most of us are stronger than we feel, and braver than we think.

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